"Care" v. Care

Lindsey, Myla, and I met today at The Children's Health Institute at Robert Wood Johnson Hospital in good old New Brunswick for a second opinion regarding Myla's GI issues. It was there we met Dr. Soula Koniaris who is the chief of the pediatric GI department at the hospital. She took a thorough history and analyzed a stool sample, which Myla had happily supplied about 15 minutes prior. She placed Myla's stool on a test strip and dropped some sort of testing chemical on it. I asked her what she was testing for. She told me that she was testing for blood in her stool. Though we couldn't see it, it turned out that Myla did have blood in her stool, which is an indication of a possible milk protein intolerance. This intolerance could cause or exacerbate her reflux symptoms. Maybe a possible answer??? We also described the every morning occurrence of cough/wretch/heave/vomit and luckily (or not) Myla proceeded to demonstrate what that looks like. We informed Dr. Koniaris that this had not occurred prior to the NG tube being placed. After witnessing that, Lindsey and I heard the words that no doctor had said before. "We need to get that tube out." Her words and tone matched the sentiment that Lindsey and I have had since the day we placed the tube. Immediately, Dr. Koniaris called in the nutritionist in order to modify Myla's feedings so that she could begin to feel hunger again. We also heard, for the first time, the word "plan." Again, matching our sentiments exactly. This is one of the two items that Dr. Koniaris demonstrated today that showed care in its truest form. Her medical thinking was very much in synchronicity with our emotional need in the moment. The other item that demonstrated care was the fact that she was the one that met with us from the beginning of the appointment to the end. She took thorough history, she established the plan, and even made the follow up appointment for us.

It is protocol at CHOP for the nurse practitioner to do much the legwork only to have the physician come in for 5-10 minutes, make a few recommendations, and give us a script. That does not instill a sense care, but I guess it does serve as "care" in the broader sense. There is something missing in the medical field that leaves the consumer feeling disconnected. It is only the master practitioner that can serve both the medical and emotional needs of their patients. That is what Lindsey and I felt today.

As for Myla's precious broken heart, though Lindsey and I disagreed on how to proceed, we have decided to give her another 3-4 months. 50% of the cardiologists suggested to continue to monitor her status, allow her to continue to grow, and hope that the hole demonstrates signs of closure on its own. We do recognize that if any of Myla's symptoms worsen, we may have to modify our decision. Thanks to everyone for your kind words, thoughts, sentiments, and love. We feel it every day.